CFS, along with PVFS and ME, are
listed by the WHO since 1992 under the ICD-10 G93.3 as an
organic brain disease and are specifically excluded from a psychiatric listing
under F48
-- From
Neuroskeptic's Blog

"We
never hurt each other but by error or by malice."
--
(Sir Robert Chambers/Dr. Johnson,
A Course of Lectures on the English Law, vol I)

I will quote and address some points it raises, but I start with noting that
over the past 32 years of having ME I have read few articles in the
paper media about ME that were good, and that this also holds for the
- so called - quality papers.

For this sad fact - that an important health topic does not get
properly discussed in the media - there seem to be quite a few reasons, of
which four important ones seem to be these:

ME started its media-career - so to speak - in a bad way, namely by being
named "Yuppie-flu" and by not being taken serious at all as a serious
organic disease, which continued, if possibly not to the same extent, after
ME was renamed by some medical committee as "Chronic Fatigue Syndrome" (a
bit like medically renaming a paraplegic as suffering from the disease
"Chronic Transport Problem").

As a rule, journalists are not scientists and don't know science, or if they
do, they certainly are not able to talk with scientists as peers, with
regards to the science the scientist specializes in.

It so happened that a group of psychiatrists and psychotherapists has
decided - without any scientific evidence - that it is in their professional
interest if many diseases that have not yet a known well-researched organic,
biochemical, physical basis, are rebranded, restyled and reclassified - in
the media and amongst health-professionals - as if they were psychosomatic,
mental, functional, delusional or whatever the accepted terminology may be
to make these complaints amenable to large doses of insurance-paid
psychotherapy or psychiatry, and ME, that so far has not a
known physical cause but has many sufferers, was high on their agenda.

Although there is excellent evidence since decades that ME is, in very many
cases, a serious organic disease with many established pathologies - and
journalists with little time can consult "Ten
discoveries about the biology of CFS"(*) by Anthony
Komaroff MD, professor of medicine at Harvard medical school - and although
the World Health Organization has classified ME since 1969 as a serious
organic disease, and in 1992 explicitly has denied that it is a
psychiatric disorder, the group of psychiatrists and psychotherapists
who have decided to exploit ME and its patients for their own interests are
top in the medical/pseudomedical fields as regards playing to the media, and
in taking seats in medical and political committees, and in presenting their
own pseudo-sciences as if it were the best "Evidence Based Science" there
is.

Hence it has been difficult for a long time for real scientists
working in the field of ME and for real patients suffering from ME to get
any good hearing in the media, or even to get as much as a non-biased
hearing in the media. (**)

It is based on an interview with a patient with ME, Nicola Warner, and on
some further investigative journalism by Penny Wark, to which I turn now. She
writes

As Nicola discovered, ME has long been the butt of scepticism and it was
only in 2002 that Sir Liam Donaldson, the chief medical officer, recognised
it as a clinical condition.

As I am not English, I do not know what moved Sir Liam not to do this
before 2002, in view of the above quoted position of the World Health
Organization (WHO), nor why he did not do it later, but such is
undoubtedly the fact: In many countries, it are presently employees of the
state that decide which diseases are to be regarded as diseases, rather than
doctors who treat them or patients who have them. (There are some good
reasons for this, if only to prevent medical fraudulence, but - in my
opinion - this is not so when it goes against the rulings of the WHO, that
also is not moved by political or financial biases of any particular
state.)

Wark says a little below this

Even so it has been hard to shift the suspicion that the condition is a
malingerers’ charter and that it has a psychological basis, a proposition
fiercely resisted over the years by vociferous campaigners. In the past
their arguments were often emotional but today ME charities are more likely
to refer the media to a relevant professional.

That ME "is a malingerers’ charter" is NOT due to patients nor to the
doctors who treated them, but is the doing of the psychiatric and
psychotherapeutical folks mentioned - and one of the things these
psychotherapeutical media-professionals out for patients have now for
three decades "forgotten to mention" in their many very friendly talks
with the media, is that there are many like me: Someone with the best
possible MSc. in psychology, an excellent B.A. in philosophy, now for
decades condemned to the dole, with no help whatsoever, and 16 hours per day
or more in bed.

And indeed Nicola Warner is another of the millions of patients who lost
almost everything by getting ill with ME, and who clearly had nothing to
gain by having to depend on the dole and on civil servants that treat one as
if one is a malingerer, simply on the strength of what they have read or
seen in the media.

A little later Wark says

Such is the hostility engendered by the debate that medical professionals
who view ME as a psychiatric disorder declined to contribute to this
article. “My views are too controversial to publish,” says one who believes
that many patients develop ME, also known as chronic fatigue syndrome (CFS),
in the context of work-related stress.

I regard that as both a clever and a cowardly move by one of the "medical
professionals who view ME as a psychiatric disorder", and also as a lie:
Such views have been published ad nauseam the last 30 years, and a supposed
scientist who in a democratic state makes a claim as I just quoted seems to
try to manipulate the media by insinuations. And in any case, what this
clever but cowardly person very probably "forgot to mention" is that what he
claims is completely against the rulings of the WHO about ME since 1969 and
1992. (Also, somebody who claims ME is caused by "work-related stress" not
only controverts - knowingly, no doubt - much scientific research into ME,
but also leaves unexplained why some 6 billion persons survive the daily
stresses of work and life without getting ME.)

Penny Wark continues:

“It’s like a battlefield,” says Dr Neil Abbot, operations director of ME
Research UK. He describes the lot of the ME patient as a “Kafkaesque
nightmare”.

That indeed - a “Kafkaesque nightmare” - is a quite apt phrase, if you have been told for 30 years that
you are a fraud, a liar, a malingerer, or at best a mentally deluded pinhead
with Yuppi Flu, especially if, like tens or hundreds of thousands with ME,
you have excellent academic degrees and never showed any sign of insanity
(except that, after 15 or 20 years of being told this, it may happen that
you get angry if you are being told that you are these things, for the
thousandth+xth time also, which then of course counts as proof positive that
you are being unreasonable, impatient, impolite, and not sufficiently
impressed by the science and moral integrity of such folks as could manage
the difficulties of qualifying in "sciences" like psychology or psychiatry,
"all honourable men").

In any case, as Wark notes, here is one effect:

The scientific literature remains small: 2,500 articles over the past ten
years compared with 20,000 for MS.

I skip some and arrive at Penny Wark's summary of Dr. Charles Shepherd's
ideas:

The ME community’s wish-list is summed up by Dr Charles Shepherd, the
medical director of the ME Association. First, there is a need to find out
how many people have the condition, because only then can their clinical
abnormalities be assessed and effective health services planned. Second,
there is a need for research, in particular into muscle abnormalities, the
role of the immune response to infection, and the extent that common neural
pathways are involved in chronic fatigue in ME and other illnesses such as
Parkinson’s and MS. Third, there is a need for trials of potential
treatments.

This is fair enough, even though personally the first point seems to me
somewhat disingenuous e.g. because one needs an organic causal explanation
"to find out how many people have the condition", and I have been waiting
more than 32 years and more than half of my life now to see it happen that
"clinical abnormalities be assessed and effective health services planned".

Why are clearly ill people with ME not helped with their disease, if clearly
ill people with MS and many other diseases with an unknown or ill-known
course are helped? Is it because too many journalists have been relaying the
pseudo-scientific twaddle about ME by psychiatrists and psychotherapists to
the public at large? Why are the clear rulings of the WHO not followed in
England? What is moral or indeed legal about letting people with ME rot for
decades in their beds without money or help?

Wark gets more to the point in the next paragraph

Shepherd points out that the impasse that surrounds ME is partly caused by
the difficulty in defining it. “This is an illness that cuts across medical
boundaries: immunology, endocrinology, neurology, muscle pathology,
infection and gene expression. There is piecemeal research going on that is
not taking account of the links that are probably there. ”

With all due respect for dr. Shepherd, who probably does not feel free to
speak his mind freely, "the impasse that surrounds ME" is only VERY "partly
caused by the difficulty in defining it". After all, ill people have been
treated humanely, even in England, for ages, although the causes of their
diseases were generally unknown, simply because they were clearly suffering.

Let me again stress that these psychiatrists and psychotherapists have been
doing this expressly (1) against the rulings of the WHO (2) without having
themselves any of the scientific qualiications (in immunology,
endocrinology, neurology, muscle pathology, infection and gene expression,
not to speak of physics, statistics, philosophy of science and logic) to do
so on rational scientific grounds and (3) without remaining within
the boundaries of the medical professional codes of behavior, that include
Hippocrates' "First do no harm" and indeed (4) without remaining within the
boundaries of The Universal Declaration of Human Rights.

Article 22.

Everyone, as a member of society, has the right to social security and
is entitled to realization, through national effort and international
co-operation and in accordance with the organization and resources of each
State, of the economic, social and cultural rights indispensable for his
dignity and the free development of his personality.

Article 25.

(1) Everyone has the right to a standard of living adequate for the
health and well-being of himself and of his family, including food,
clothing, housing and medical care and necessary social services, and the
right to security in the event of unemployment, sickness, disability,
widowhood, old age or other lack of livelihood in circumstances beyond his
control.

I arrive at the opinions of dr. Holgate as rendered by Penny Wark:

Stephen Holgate, professor of immunopharmacology at the University of
Southampton, chairs the Medical Research Council’s expert group on CFS/ME.
“As a clinician who sees patients with this group of diseases I recognise
there’s a real thing here, it’s not all psychiatric or psychological,” he
says. “Unquestionably in some of these patients there are abnormalities and
biochemical changes in the brain, the central nervous system, the spinal
cord or the muscles. My personal view is that we’re not dealing with a
single condition.”

Here I must suppose that dr. Holgate is speaking very diplomatically,
though I appreciate and welcome that he says "there’s a real thing here,
it’s not all psychiatric or psychological" - whatever his precise intent or
meaning here.

However, since I did have a scientific education, it would seem to me that
if

"there are abnormalities and biochemical changes in the brain, the central
nervous system, the spinal cord or the muscles",

any real scientist would and should first concentrate on these, while
he may well privately reflect that to call these "psychosomatic" or
"somatoform" or "malingering" might well be sufficient cause for him, if he
- as a medical professor - were at the receiving end, to hire a lawyer and
seek compensation (which he might very well get, in view of the WHO rulings
on ME, and his degrees in medicine, and the dangers to his health, wealth
and chances on a happy life if misdiagnosed).

Finally, there is a somewhat curious passage, that starts with a remark by
Penny Wark, that I suppose is a summary of what dr. Holgate was saying:

The MRC [Medical Research Council - MM] is ready to commission
more research on ME, he says, but the stigma and scepticism
associated with the condition do not make it an attractive option
for top quality scientists.

Personally, I'd guess that real "top quality scientists" are NOT
frightened by this, and indeed that a few "top quality scientists"
HAVE and ARE not been frightened by this, but Wark
continues as follows:

“The debate is so polarised that scientists are frightened to get
involved,” says Holgate. “My aim is to get everyone round the table,
so that instead of people throwing bricks at each other we can agree
on the priorities, get some quality proposals written up and build
confidence in the research community. The need for more research is
urgent because what’s happening now is unacceptable for patients and
it’s costing the Government a lot of money.”

Of course, if you are a "top quality scientist" the least you need
to do top quality science in a medical field is research funding
- and of that there is very little, precisely because the psychiatric and
psychotherapeutical pseudo-scientists have been trying for decades
to prevent that the study of ME gets funded in a way that
real science can do real research into it.

But I am willing to assume that dr. Holgate means well, and is a
more diplomatic sort of person than I am (and also a person with far less
pain than I have, I sincerely hope), and that he does succeed in
getting a lot more money into funding real scientific research
into ME.

Even so, I do like to remark that if it is true - as I suppose it
is - that his present aim is

"that instead of people throwing bricks
at each other we can agree on the priorities, get some quality
proposals written up and build confidence in the research community",

the reason this has not been done over the last 32 years that I have
suffered from this disease is that the pseudos have taken over a
considerable part of the science that should have been done but was
not, and that it is a shame to have to read that apparently the
activities of these pseudos has so much upset the course of real
science that for over thirty years there has been no agreement on
priorities (other than those of pseudos), there have been no quality
proposals (but much pseudo science), all with the result that many
people have no "confidence in the research community".

Concluding: As I said, this is a good article in The Times about ME:

It seems fair; it is based upon some research; it reports the various views;
it gives some insight into the difficulties that real medical doctors and
real scientists have in their struggle to remove the part of medical science
including research funding from the manipulative hands of the media-savvy
pseudos; and it also managed to give a patient with ME a fair hearing.

Like nearly all things in life, it also could have been better, but if more
journalists over the past 32 years that I have ME had reported about it as
in the article I have just reviewed, it is very probable that much more real
scientific research into ME could have been done, who knows with what
results.

The scientific and moral problem with ME is not that doctors cannot explain
it, but that patients get no help and no support, all on the strength of the
intrigues and lies of a handful of pseudo-scientists in psychiatry and
psychotherapy, who are not even qualified to pronounce with any rational
conviction on the possible causes of ME.

Happily, there are some capable real scientists who have done and are doing
impressive real scientific research into ME.

It is high time that at long last they get properly and proportionally
funded, as it is high time that at long last patients with ME get the same
sorts of rights and benefits other people with diseases also get.

1. Ten reasons why ME is a real disease by a professor
of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about
maltreatment of ME.
3. Explanation of what's happening around ME by an investigative
journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an
organic disease
6. English mathematical genius on one's responsibilities in the matter
of one's beliefs:"it
is wrong always, everywhere, and for anyone, to believe anything
upon insufficient evidence".
7. A space- and computer-scientist takes a look at psychology.

Notes

(*) Two notes here: 1. Personally - like many people with
ME - I do not like the name "Chronic Fatigue Syndrome" since it is a term
that is seriously misleading about my complaints and - I suspect - designed
to pooh-pooh its patients, because so many diseases are accompanied by
chronic tiredness. Therefore I like to avoid it. 2. There has been done a
considerable amount of real scientific research into the causes and symptoms
of ME. Here is a link to
a good medical report to the Canadian government - which, it is also
true, is mostly medicalese and not journalistic prose.

(**) There are two reasons for the media's failings as
regards ME, broadly speaking, it would seem: First, the psychiatric and
psychotherapeutical folks, who don't do real but pseudo-science, have
much more time and training in charming journalists, and indeed may
be highly gifted in precisely that field, and second, journalists have been
trained on the principle of letting both sides to a conflict speak, while
meanwhile steering their own course mostly in the middle of the road. (In
cases where the truth is definitely on one side only - "There were no German
concentration-camps", "ME is all in the head", "2+2=5, as Comrade Big
Brother says" - this does not make it easy to find the truth from the
media.)

(***) That one's complaints are not taken serious is a
common finding of people with ME, which testifies to the extent the
pronouncements of pseudo-scientists specializing in psycho-babble have been
popularized by the media - for to treat an ill person as if that person "is"
or "must be" a "faker", a "malingerer" or a "fraud", or indeed
"mentally ill" on no other evidence than that the person complaints of
feeling physically ill while such tests as the G.P. has done provide no
evidence for a known disease with known biological markers, if not outright
insane, is most impolite, if not, in a human-all-too-human way, somewhat
inhuman.

But perhaps La Rochefoucauld had it pat for most people:

"We have all sufficient force to support the ills of others."

Or as Montaigne said, in a somewhat different context:

“It is putting a very high price on one’s conjectures to have
someone roasted alive on their account”

Rephrased for ME:

“It is putting a very high price on the conjectures of
commercially interested modern witch-doctors to condemn ill people to
decades of discrimination, abuse, and pain without providing any help”.